How to Donate
You have two options to donate to the cause:
Option 1 - In October 2011, we formed a partnership with the Rett Syndrome Research Trust (RSRT). A fund has been established through RSRT which will solely benefit research for MECP2 Duplication Syndrome.
The MECP2 Duplication Syndrome Fund will exclusively support scientific meetings and projects devoted to the study and means of treatment of MECP2 Duplication Syndrome. 100% of every dollar contributed will be invested in research – not a single penny will go to overhead. The Fund puts the intellectual and scientific resources of RSRT immediately to work for the MECP2 Duplication Syndrome community.
The dramatic reversal of Rett symptoms in mice described by Adrian Bird in 2007 opened the field to questions that now must also be explored in the MECP2 Duplication Syndrome. We know that in Rett, restoration of proper MeCP2 function in mice only days away from death brought them back to health. Would elimination of the influence of excess MeCP2 in the Duplication Syndrome have a similarly dramatic effect?
The reversal experiment to be undertaken in the lab of Huda Zoghbi will cost $236,000 over 3 yrs. While the funds will need to be raised in their entirety, a minimum of $80,000, the cost of the first year, will allow the project to begin. The quicker we can raise these funds, the quicker the experiment can start.
RSRT supports some very unique approaches to mediating the influence of MeCP2 via the immune system or modifier genes that could be applied to the Duplication Syndrome. A relatively new technology called RNA interference, which is used to “turn off” the effect of genes implicated in diseases is yet another important tool for work on the Syndrome.
These are only a few of the potential projects that are waiting to be pursued. Projects supported by this Fund will undergo a rigorous evaluation process.
We hope that the families affected by MECP2 Duplication Syndrome and those who know and care about them will be encouraged and energized by the possibilities that are waiting to be explored with this new framework in place. Your participation and commitment are more than welcome: they are a necessity. It is your energy that will fill this new structure and determine the speed and intensity of MECP2 Duplication Syndrome research.
You can support the MECP2 Duplication Syndrome Fund through:
Sending a check or money order to:
Rett Syndrome Research Trust
67 Under Cliff Road
Trumbull, CT 06611
(Please note in the memo line that funds should be allocated to the MECP2 Duplication Syndrome Fund.)
For more information on additional ways to donate to the Rett Syndrome Research Trust and the MECP2 Syndrome Fund, visit: http://www.rsrt.org/support-rsrt/mecp2-duplication-syndrome-fund/
Option 2 - At Dr. Huda Zoghbi's lab in Texas, there are two types of ongoing studies...one basic and one clinical aimed at understanding disease mechanism.
When sending funds to Baylor College of Medicine for MECP2 Duplication Syndrome research, you can specify how you want the funds distributed.
Dr. Huda Zoghbi is conducting basic science research on MECP2 Duplication Syndrome. This involves studying the pathophysiology of disease in mice engineered to have the syndrome as well as the testing of drug compounds to see if the disease process can be impacted.
Dr. Melissa Ramocki is conducting clinical research on MECP2 Duplication Syndrome. It is important to understand the natural history of the syndrome, as well as the effects of the size and gene content of the duplicated region on clinical phenotypes, in anticipation of clinical trials in the future. She is also interested in understanding why affected children are predisposed to infection so that the infections can be prevented.
To make a secure, online donation:
1. Click the following link: https://connect.bcm.edu/donatenow
2. Click the "Continue to this website (not recommended)" button if it appears. This is for security purposes and will not be harmful to your computer.
3. Select "Other" from the dropdown box.
4. Enter the amount for donation in the top box and type MECP2 Duplication and how you wish to have the funds distributed in the lower box. Example: $75.00 to basic science research (Zoghbi) and $25.00 to clinical research (Ramocki).
5. Click the add to cart button and follow the instructions.
If you wish to send a check or money order by mail:
Print out a gift form (http://188.8.131.52/NETCOMMUNITY/Document.Doc?id=68) which has honor/memorial prompts as well.
*Checks should be made out to Baylor College of Medicine.
In the memo section, designate MECP2 Duplication and how you wish to have the funds distributed -- Example: $75.00 to basic science research (Zoghbi) and $25.00 to clinical research (Ramocki).
*The form and check or money order should be mailed to:
Baylor College of Medicine
Office of Development
One Baylor Plaza, MS: BCM160
Houston, Texas 77030
Baylor College of Medicine is a 501(c)(3) organization, so donations are tax-deductible.